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Not Just “Bad Periods” – Results from the 2018 Endometriosis In America Survey

Endometriosis impacts physical and mental health, as well as overall well-being. Symptoms can occur frequently and be severe, and many women have to wait years to receive a diagnosis. We conducted a survey to learn more about symptom management, treatment satisfaction, and experiences with healthcare providers, as well as common coping techniques and sources of support. More than 1,000 women shared their story of life with endometriosis.

The diagnosis journey

Many women with endometriosis experience delays in diagnosis, often showing symptoms for several years before they get answers. When their symptoms first began, over 3/4 of women thought they were related to the menstrual cycle. Similarly, over 1/2 tried using over-the-counter treatments, or tolerated their symptoms and “went on with life”.

Symptoms can be frequent and severe

Many deal with endometriosis symptoms on a regular basis. 7 in 10 women experience symptoms at least a few times per week, and almost 1/2 have never had a time without symptoms. For the majority of women, symptoms worsen during the menstrual period. Many women also experience worsening symptoms before the menstrual period, during ovulation, or when stressed.

Symptoms impact quality of life and well-being

For many, endometriosis affects various aspects of quality of life. Many women experience physical, social, and emotional impacts to their well-being. Overall, 1/4 are not at all content with their quality of life right now, and while many receive emotional support, a large percentage of women said that they need help finding coping techniques.

Treatment experiences and healthcare provider satisfaction

Although 2/3 of women feel that they play an active role in treatment decisions, few believe that their endometriosis is controlled. More than 3/4 of women have had a laparoscopy to treat their endometriosis, and over 1/2 have had more than one. Despite these treatment experiences, many were satisfied with their healthcare professionals.

How endometriosis affects overall health

Thinking back to when they were first diagnosed, over 3/4 of women said that they wish they had known more about how endometriosis would affect their mental and physical health. For example, many have experienced endometriosis-related complications, including bladder and/or bowel problems, endometriomas, and adhesions.

#EndoWarriors

Endometriosis can create many challenges, both mentally and physically. However, women with endometriosis are strong, with many connecting online and supporting each other in the fight.

The Endometriosis in America 2018 survey was conducted online from June through July of 2018. Of the 1,239 people who completed the survey, 90% were people who have been diagnosed with endometriosis and 4% were in the process of being diagnosed.

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